Keeping It Real for October 17, 2009

• By CHANTE DIONNE WARREN
• Advocate staff writer
• Published: Oct 17, 2009 - Page: 9B

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Unbeknownst to many, Joseph Walker, an otherwise seemingly healthy 22-year-old Southern University mathematics graduate and former marching band member, dealt with sometimes painful sickle cell anemia episodes during his marches on football fields with the Human Jukebox.

Walker said the pain popped up during classes, even requiring he use a cane at times. But he pledged not to let his disease defeat him and he learned that it was wiser to inform others rather than to hide his condition.

To spread more awareness about the inherited blood disease with which he was born, Walker joined the Baton Rouge Sickle Cell Anemia Foundation this summer and plans to participate in the organization’s “What’s In Your Genes” walk  at 1 p.m. and a town meeting at Southern University’s Nursing School at 2 p.m. Oct. 22, Sickle Cell Day.

About 600 people live with sickle cell anemia in greater Baton Rouge,  and about 6,000 in the state have the disease, said  Lorri Burgess, director of  Baton Rouge Sickle Cell Anemia Foundation. She said thousands of families carry the gene and don’t know it.  The awareness program will also include testing.

The average life span for a person living with sickle cell is 30s and 40s, though Burgess has a member who is in his 70s, she said.

 Burgess said more progress is needed in caring for sickle cell patients. Only one federally approved drug is available for the treatment of sickle cell, she said.

 “Often they have advanced complications because they didn’t have proper health care,” she said. Sickle cell is a genetic condition present at birth which results from a child receiving two sickle cell genes, one from each parent. The disease, which is incurable, affects primarily the black population and carries with it complications including anemia, infections and pain episodes resulting from sickle-shaped red blood cells blocking blood flowing through vessels to the chest, abdomen and joints, according to the Baton Rouge Sickle Cell Anemia Foundation. 

 Walker takes medication to manage pain. “I always try to describe it as someone who has a cold or the flu. I have good days and bad days. Some days I can’t do anything for myself and so I have people I trust help me. Sometimes I get into so much pain until I go to the emergency room,” Walker said.

He had a campus school nurse he visited during a pain episode. When Walker was afraid to reveal his condition to band directors after a tryout, the nurse informed the director.

“I pleaded with her not to (tell them) because I didn’t want it to affect their decision about me joining the band,” Walker said.

It did not. Walker earned a spot on the team and learned that the assistant director had a  nephew living with the disease.  “In the first year, he wanted to monitor me and so I recorded field shows. I still came to practice every day but I was never in the shows during the first year,” Walker said.  “People in the band treated me just like anybody else.” He marched during games and shows for his last three years at Southern, he said. 

Walker is working on his master’s degree at LSU and plans one day to teach math.

“If I walk around moping about sickle cell, then it’s going to defeat me,” Walker said. “We deal with fatigue and dehydration and sometimes I get up and I’m drained. But you have to get up and force yourself  to go to work and class. Otherwise, you’ll lay in bed seven days a week.”